How I’m doing with ME/CFS

This post was triggered by watching a video about PhysicsGirl and how she’s been suffering from Long Covid / myalgic encephalomyelitis / chronic fatigue syndrome:

What do I hope people get out of it? Well, as my blog says, this is my 2 cents added to the pile of info already out there. When learning about writing or making movies I found it useful to read different points of view, so here’s another CFS POV for people to consider. For those of you newly diagnosed with CFS (and with the energy to read and digest; if not, then for your loved ones), I describe my journey (so far) so you at least have something to compare your ‘adventure’ to.

I was officially diagnosed in June of ‘20, just in time for the Covid lockdown. I’d been dealing with unexplained fatigue since at least spring of ‘19 and been to lots and lots of doctors. The docs were narrowing in on a diagnosis of CFS, since all the test results were negative, but what persuaded me to continue pushing was being paid to stay at home, but unable to make any headway on any of my personal projects.

My symptoms steadily worsened over the 6-8 months before my diagnosis, but I didn’t realize it at the time. My work (programmer) was such that if it took me a week to do a few hours of work, it had no impact on anyone else, so I just shrugged it off with lack of motivation. I started a new job just 2 weeks before the lockdown. The sort of professional work I’ve been looking for nearly my entire programming career. Yet I struggled with tasks that were largely rote from just a year or two earlier. Even when I got an example snippet of code from an earlier project where I did exactly the same thing, I couldn’t get it to work. I ‘justified’ this with the excuse it was a new job with a new code base and it made sense it was taking a while, but I knew deep down that was a lie.

When the lockdown happened I was kept on the payroll, so was very much looking forward to being paid to work on my personal projects (due to the nature of my work, it could not be done remotely). Yet I had the exact same struggles with all my personal projects. So many struggles, in fact, that I became convinced I was in the early stages of dementia. My nurse wife pretty much laughed in my face, insisting I didn’t actually have any such signs, but that did nothing for my worry.

One of the theories around CFS (what I’m used to calling it) is it begins as a result of a viral infection that leaves the body in some sort of state that it keeps on battling even after the virus is cleared, thus the continued exhaustion. For some reason. Who knows. Hopefully the money to research Long Covid will lead to something for all the ME/CFS people out there. The previous time I had unexplained fatigue (can’t remember the dates any longer (one of my symptoms is what I term Swiss Cheese memory)) I was given a test for Epstein-Barr virus and the results came back indicating I had recently cleared an infection. Indeed, the same test run when the later episode began turned up the same results. Unfortunately, that’s not really helpful, as lots of people have the same sort of results, but lack any fatigue symptoms. The research I was able to absorb (I used to be good at that sort of thing, having a biochemistry degree and many years of laboratory research experience) indicates that there still isn’t any sort of actual diagnostic for CFS, let alone experimentally supported theory for what caused it, why it continues or what’s causing the fatigue.

It’s often very difficult to get people to take you seriously when you tell them, since you look perfectly fine. I didn’t (don’t) look ill at all. To know anything’s wrong with me you have to know who I used to be, to know that something’s wrong when I struggle to carry on a conversation, watch TV longer than 20-30 minutes or read something non-technical for more than a few paragraphs (heck, even new fiction was a struggle; I had to give up beta reading). During the worst of my experiences (I’ll say ‘so far,’ since there’s no cure and any successful treatment can stop working at any time, for any reason) I was still able to get up and down the stairs. Granted I’d often have to rest a couple of times going up, and had a tight grip on the handrail going down. I’m one of the ‘lucky’ ones, who was never bedridden, always able to make it to the bathroom by myself, eat by myself, etc. I was housebound for a good long while, though. But since that coincided with the lockdown, it really didn’t seem like such an issue.

It took me until the end of ‘20 to find a specialist. There are very few, though maybe that’s changing now with Long Covid. Initially, I didn’t feel the specialist was very helpful, though it was refreshing to have a doctor that took my symptoms seriously. It was still ‘try this, try that and see what happens,’ but what he did ‘prescribe’ that ultimately made a huge difference to me was to exercise. Yes, I know everyone says exercising is counter productive, but that’s exercising _too_ much. The longer your body goes without any exercise the more difficult it is to do anything, and my specialist’s point of view (which I totally subscribe to now) is by exercising, even if it’s just a little, your body will retain what muscle tone it still has, and will work to increase it. When I started, I was doing a whopping 2 mph on a flat treadmill for a whopping 3-5 minutes. And I’d often be so rubber legged when I was done I’d have to stand for a minute or so to be able to walk away. It took a long time (like months), doing this 3 times a week, to reach 15 minutes! But even after a few weeks I began to feel a positive difference in my day-to-day. It’s _very_ easy to overdo things, and it’s critical to quickly learn how your body feels when you’re about to ‘exceed your energy envelope.’ For me, if I overdo things I often feel _better_ the next day, making it really easy to overdo things two days in a row, leading to even worse results. Overdoing things triggers PEM, or post exertional malaise. Malaise indeed! And it can _easily_ take weeks to more than a month to recover from the PEM to get back to the level before overdoing things. All the while struggling to do even the most basic exercise.

Want to know what’s even worse? _Thinking_ too much can trigger PEM. I, of course, discovered this the hard way, because that’s just who I am. And, being the scientist I am (or, was, I guess), I had to replicate the experiment to get the same results before I believed them. I was really upset when I talked to my specialist, complaining about this, and he basically shrugged and said yes, this is a CFS thing. I used to use my brain for a living as a programmer. I got a biochemistry degree and an MBA intending to build a biotech business, even getting a patent for a DNA sequencing chip. I made extensive use of my brain writing novels, screenplays and making movies. Now, I struggle to do even pedestrian programming, have almost given up on biotech, other than emails (which can run novel length ;-), in the last 3 years only I’ve written part of a screenplay and a chapter in what was intended to be a novel. And 99% convinced myself I can never make movies again.

Depression is a real thing, for some people worse than others. One of the drugs I take is a low dose antidepressant (antidepressants, particularly at low dose, having significant success for some people for who knows why), so maybe that’s helped me over the long run, but I’ve certainly had black periods. I was helped talking to a counselor who convinced me to allow myself to be unhappy, angry, even depressed, as that permission makes it easier to let go later. The biggest issue I’ve found is ‘rebuilding’ myself, to find some reason to look forward to the future. Honestly, as I write this in March of ‘23, I’m still struggling with this. Even after getting a really good combination of drugs. The combo isn’t enough to make me feel normal, but allows me to recover from overdoing things, physically or mentally, in days instead of weeks or longer. I often still struggle with conversation (I vastly prefer the written form of communication; I can edit!), though I do better (less bad) than before. I’ve built my body up enough that I can work on things around the house, though I have to be very aware of how far I’ve pushed myself. I still overdo things, still suffer from PEM, just recover faster. I’ve gone 30 minutes on the treadmill at 3 mph and even finished a 5K walk (saved from being last by an old man with a cane). But I’m not able to handle very complex programming tasks, and even simple bugs (well, simple once I finally figure out the problem) can take weeks to resolve (‘weeks’ because I often have to put it away after a day or so of effort). I’ll be able to write something like this blog post without too much difficulty, though misspelling so many common words can make me upset enough I have to take a break, which can last for hours or even days. I can watch new movies sometimes as often as once or twice a week. What’s that go to do with anything? Well in the beginning, I found it impossible to focus enough on a new movie, or a new video topic, long enough to understand what was going on, so stuck with rewatching things. Still, even now, watching new movies can tire me out pretty quickly. I’ve mostly avoided reading any new novels to this point, particularly as a beta reader (someone who helps an author with a new work), because it’s a much higher level of focus for much longer than movies, though I can put the book down. Except by putting the book down I run the very real risk of having forgot much of what I read the first time and have to start over. Sigh.

For anyone interested, the drugs that work for me are Wellbutrin (extended release version of bupropion), 2 tablets, 300 mg total, two types of Adderall, 10 mg of ‘fast release’ and 30 mg of ‘slow release’, but what’s really seemed to make a huge difference is taking the over-the-counter antihistamine Xyzal, 2 tablets, 10 mg total. A disclaimer: do not self treat if you’ve been diagnosed with CFS. And if you haven’t, still don’t self treat, keep looking for a doctor who will actually listen and help you. Adderall, for instance, is a controlled substance and having it without a prescription can land you in jail. I tried _lots_ of drugs to get this combination, and some it took more than a month to know it wasn’t helping (though some I knew were making things worse within days). For me, the Xyzal was transformational. Interestingly, when I started taking it I didn’t feel any different at all. Even after a few weeks I was considering stopping, just because it was yet another thing to keep track of taking each day (I also take a lot of supplements, and attribute, real or not, my not getting Covid – even when my wife and son got it – to taking the supplements, particularly vitamin D3). When I knew it was doing magic was when we were getting ready to sell our ‘city’ house (where we both worked) to go live in our ‘country’ house (which my wife and I built, just the twain of us, beginning back in ‘06) since I wasn’t working any longer and my wife could work remotely all but 2 days out of every 2 weeks. I knew I was going to overdo things, but stuff had to get done and I’d do what I could then just suffer through the PEM. I was knocked down, but, amazingly, after a day and a half resting I was able to continue work!

The presumed theory behind Xyzal, or any antihistamine, is the idea your body has locked itself into a mode of fighting itself like with an allergy. Except when the allergen is gone, the physiological response continues. The antihistamines do the same thing they do for allergy, try and rein in the body’s overreaction to a more manageable level. There’s a lot of thought that CFS is some sort of autoimmune response, which has led to much experimentation with anything that works for other autoimmune diseases, like Multiple Sclerosis. Again, to my knowledge, none of this has been supported by reproducible experiments. Indeed, it’s entirely likely that what’s termed ‘ME/CFS’ (or Long Covid) is actually a spectrum of issues (diseases?) that have the same basic symptoms, but different origins, thus require different treatments. The biggest frustration is simply not knowing!

Recovery in any form can easily be a double-edged sword. I have clear memories of what I used to be able to do with impunity and only fuzzy memories of the ‘new’ me. For example, after moving our exercise equipment and setting it up, I stupidly got into a weight lifting contest with my strapping 18 yo son. We might’ve tied with the bench presses (I had been doing weights along with my treadmill (‘had’ because at present I do all my exercise taking care of our house and surroundings)) when we switched to leg lifts. Instead of being smart and starting over with low weights, I left the setting the way it was and tried to lift my legs. Couldn’t make it happen no matter how hard I strained. Nor with the somewhat lower weight. Had to go down further to finally succeed. Interestingly, I didn’t feel any pain for several days, but that dramatically changed and it reached the point I could barely walk. It turned out I tore the meniscus on both my knees. Genius. It took months to get scheduled for surgery, and since the pain slowly started to ebb away – and there’s no guarantee surgery works anyway – I decided not to have it done. I still get pain often, but it’s not debilitating _most_ of the time (there have been occasions where I’ll take the in-store scooter again, because one or the other hurts so much).

Scooters: It was _very_ hard, initially, for me to ride a scooter in the store. But it was driven home to me when I kept triggering relapses because of my hard headedness. I was going to get a handicap tag, though that felt like giving up to me, so I dilly dallied. Easier, since we had an older copy of my mother-in-law’s hang tag for when we couldn’t find a regular parking space nearby. Ultimately, out of sheer laziness, I never got one, and now (fingers crossed) I don’t need it. I had to work hard to make myself OK with being pushed around in a wheelchair when I needed to be out and about and no scooters were around, but eventually I reached an internal equilibrium. It was hard for me to be OK with letting people help. I don’t care for dependency, yet I’m fine with others being dependent on me. Go figure.

So, what now? You’ve progressed past the stage where you’re 100% vegetable to a state where you’re… less vegetable. But you’re beginning to accept, perhaps with lots of resistance and plenty of kicking, screaming and cursing, that ‘less’ veggie is as good as you can look forward to. Being able to go to a big box store without needing the scooter isn’t, to the average person, something to be excited about. And feeling excited about it can, itself, trigger depression when you think about the ‘old’ you. It sure as hell has been that way for me. What I’ve been using to keep me going, so far, is seeing the progress I’m making compared to the ‘bad old days.’ Indeed, the very writing of this blog post has helped me to realize how far I’ve come, and helps give me more motivation for the future. The challenge becomes: how to continue toward your old goals with the new you, or how to develop suitable new ones. I’ve been trying to work both angles, though without a whole lot to show for my efforts yet. But that’s providing some ‘reason to be’ that I sometimes lacked, sometimes for very long periods.

People reinvent themselves all the time. Rebuilding yourself after CFS is just another reinvention. I graduated with my MBA all set to get into biotech management, only to find no one gave a damn about an MBA, unless accompanied with a relevant PhD. Which I opted out of because of my ignorant conviction it wouldn’t matter. Because I ‘accidentally’ learned to program as part of a graduate research project, I was able to reinvent myself as a programmer. But it did take around 5 years before I started to become serious about programming as a career, after having invested a decade into biotech. I’m trying to be patient, accepting it may take a few more years before I successfully reinvent myself, though patience has never been a strong suit of mine. It certainly doesn’t help that I often forget what the heck I was thinking about before making some sort of record I can read later, but that’s just another adaptation. I email myself _lots_ of notes using my wife’s phone (I can’t stand the damn things; despite making my living as a programmer, I’m quite the Luddite), not to mention having reminders in my calendar. Complex stuff, but also simple stuff, like taking my drugs each day. I don’t delete the message until I’ve actually taken them, and there have been a few times where I had to think hard if I actually did take them earlier. I’m pretty sure I never missed a day, but I can’t be certain. And learning to be OK with that uncertainty is probably the single biggest challenge for me.

So long story summarized: be kind to yourself (rewind!) and give yourself permission to be angry, depressed, or whatever you need. Then let it go and clear your mind (Neo) and think about what you can do within your current limitations. Rinse and repeat as often as necessary, find a reason to fight to the next day.

And exercise – very slowly and cautiously. Exercise really is key to long-term success. Even if it’s just lifting your arms while you lay in bed. Recovering muscle is really slow and difficult for people who can’t push hard, so keep as much as you can.

And be OK with overdoing things. You’ll never know where the edge is if you don’t slide over from time to time. Just try to recognize when you’re there, so next time you can pull back. For me I find I start to gasp when I’m starting to overdo things. I know I’ve gone too far and can expect some time with PEM when I finally stop (over)doing whatever I’m doing and I can barely stand, let alone walk. When doing your exercises, don’t increase your time/pace/whatever until you’ve successfully worked at the same level of activity at least a week, ideally two. Or be like me and push too far, too fast, and spend more time as a vegetable drooling in front of the TV.

Good luck!

PS: I’ll be ‘cross posting’ this on another blog of mine.  No link, because I try to keep them separate.

Author: mitusents

Biochemist, MBA, then programmer. Now novelist, screenplay writer and hopefully director. What a strange trip it's been.